Sorry that you can't see it properly but my write-up and photos will have to wait until I've drawn your attention to my vest because today, Tuesday the 24th February, is the official National launch of Join dementia research. The Hugin marathon was the first outing for my tee shirt and I was very proud to wear it. I took loads of photos on the day and will try and catch up in the next day or so.
Join dementia research (JDR)
I've been shouting out about the need to link people with researchers ever since I started speaking about my mum's dementia 10 years ago. In 2010 I attended a Ministerial debate on dementia and met like-minded people. Fast forward to 2012 and I was invited to represent Alzheimer's Research UK as a Lay Champion helping DeNDRoN develop the system. I've already written about that a lot in the past so I won't repeat it here, suffice to say that everyone involved came from a different angle but with a common thread joining us - we'd all been affected by dementia in some way.
At first, our meetings were chaired by Simon Denegri, Chair of INVOLVE (don't you just love all these acronyms!!!) and National Director for Public Participation and Engagement in Research. He guided us through the minefield of issues that needed to be addressed. On his blog, to celebrate launch day, Simon writes:
The service has been in development for over 2-3 years with people with dementia and their carers fully involved in the design of every aspect. When the Lay Champions Group began its work all that time ago it is difficult to convey the daunting nature of the task that lay ahead of us or its complexity. Giving people a safe and secure way of signing up for research in this way has felt like building a skyscraper on a small plot of land in a crowded city. But the determination was always there and it is in no small part due to the commitment of those champions (many of whom will be speaking to the media today) and also the commitment of the organisations involved, to working in partnership with them.
The launch date had been planned for a long time but was over-shadowed somewhat by the exciting news launched at the weekend which I wrote about in my last post. As a result the Press Call with attendant Minister had to be shelved but, having said that, there's still lots going on today. It does however mean that I didn't need to trek back into London so at least I can get my blog up to date!
Yesterday was all about pre-filming and so I headed into London at silly o'clock to be available at JDR headquarters in case any media opportunities came up. I'd been up and about bright and early as I needed to leave home at 5:45am to catch the 6:15 train. I fed the horses and Tilly, checked emails and generally faffed around until I suddenly realised that I needed to get a move on or I would miss my train.
Panic mode ensued.
Normally I would have prepared my travel bag the night before but I was too tried and full of wine following my marathon and had decided to do it in the morning. Bad decision Susie! This of course meant that in my haste I forgot to collect the camera, some knitting for the train & my bottle of water to keep me nicely hydrated (for the first time in ages I was rather dehydrated after the marathon but I'll save that for my next post).
As I'd left home so early the Newsagent wasn't open so I didn't have a paper to read which was quite nice as it made me look out of the window and enjoy the view. That kept me occupied until we reached the suburbs when I started to read through my notes which I had managed to pick up before dashing out. Having finished that I decided to play a word game, something mum and I did every day since I was a child and I still do now. We used to play Scrabble a lot with mum and she invariably beat us. I took no pleasure on the day that she stopped beating us. I love those word wheels you see in the papers, Sudoko etc but without my newspaper I had to create my own game. I decided to see how many words of 4 letters or more that I could make out of 'Join dementia Research' in 20 minutes (353 - I do love palindromes). Then I went back to looking out of the window and people watching.
I always enjoy walking through London in the early morning and it was a lovely bright day. Of course, as I hadn't got my camera I can't show you the bunting in China Town which looked so pretty in the sunshine or the friendly cat I met in Seven Dials, an area in Covent Garden which I always like to walk through as Mike's first studio was there. I was heading to Old Gloucester Street to DeNDRoN HQ to meet up with the JDR team and a very special lady, Wendy Mitchell who has early-onset Alzheimer's:
I've spoken with Wendy on the phone and follow her blog and the reason I was so excited to meet her was that she is such an inspirational lady.
A couple of weeks ago Wendy and I had a conference call with Piers and Zara, from JDR, to plan the activities surrounding the launch. During the conversation Wendy and I just started chatting and sharing our experiences. I noted that we are the same age and that it's important to find out why one person develops dementia and the other hasn't (not yet anyway, fingers crossed) which is why JDR is such a valuable tool to investigate this. Piers spotted immediately that it would be great to share our passion about the cause and so it was agreed that we would be filmed before the launch.
It was nice to see Terry back at the office as he'd been our guide during most of the development process but had left to pursue a career in acting before JDR was completed. He was taking photos throughout the day and popped up all over the place.
Piers very kindly gave up his office for filming and look at the colour of his sofas - they match the JDR logo perfectly! Zara was a bit worried that we were going to chat without a script as she thought we wouldn't be able to sustain a conversation without prompts (as if!!!) but Piers commented that we'd be fine as he'd already heard us gabbling away earlier in the day. It was decided that I should take the lead and introduce each topic as and when required.
|All wired up and just testing the sound levels etc.|
We agreed that our starting point would be what had prompted Wendy to visit her GP which was the start of her dementia journey. As we are both the same age it was really easy to introduce JDR as a way of finding out more about the disease: On one hand we have Wendy, non-smoker, doesn't drink, leads a healthy lifestyle and has no history of dementia in her family whilst in my genes I have every available indicator to suggest I could develop dementia. We chatted away freely and without hesitation for over 30 minutes. I caught myself saying "indeed" several times so I hope I managed to keep that in check as it can be very annoying when someone keeps repeating the same word. I've always been a hand waver too but I stopped worrying about that years ago as it's just part of my style!
Finally I paused to ask if there was anything else they would like us to discuss but the Piers came in to collect me as we were heading off to interview and film Prof. Martin Rossor at University College London hospital which was only a 5 minute walk away so we had to dash off.
I'd been given a set of what I thought were innocuous questions they wanted me to ask him and had been told that he wouldn't agree to answer them all and so I must only ask him certain things blah, blah, blah. Oh really? I've met him a couple of times before, most recently at the Royal College of Physicians where he chaired the meeting, and I'd found him approachable and friendly so I paid no heed.
The hospital was bustling and was clearly not the right place to be filming or was it just that I hate hospitals, for reasons I won't bore you with. The guys collected some shots of me walking through the doors to meet Martin but it really wasn't practicable to interview him in his consulting room as it was too dark. He'd only just finished a consultation with a patient and was very gracious to give us his precious time so we headed over to his main office across the road whilst the film crew took a few background shots.
This left me alone with him and we chatted easily whilst we waited for the others to join us. I noticed a photo of him performing what looked like a dressage move on a horse which started us chatting about eventing and all things horsey. We chatted for a while before he found out I'd run a marathon the day beforehand and it turned out he'd run marathons too so the ice was well and truly broken. He then asked me for my background just so he understood where I fitted into the picture.
The thing I really wanted to ask him was how he reconciles being both Clinician and Researcher, two very different roles and I was delighted that he gave me a very personal viewpoint. We went through the main questions I wanted to ask him and I checked if there was anything he wanted to add and he came up with something I shall use in future; he would like people to become 'data donors' in the way that we are blood donors. I think that is a wonderful way of promoting JDR! This time I was not filmed as it was just about Martin speaking to camera. He spoke really well and I look forward to seeing the final edit.
After that it was time for me to head home and I was rather pleased as I was quite tired - must be getting old! More updates to follow asap.